FAQ & Answers

2. Who is the doctor that identified the spirochete that causes Lyme disease?

Dr. Willie Burgdorfer identified the spirochete responsible for Lyme disease (Borrelia burgdorferi) in the early 1980's.

3. How long after a person is in contact with an infected source will Lyme disease symptoms appear?

Lyme disease symptoms may appear days, weeks, months or years after the initial infection.

4. How many species of ticks carry the Lyme disease spirochetes?

At least nine species of ticks, six species of mosquitoes, 13 species of mites, 15 species of flies, two species of fleas, and numerous wild and domestic animals (including rabbits, rodents, and birds) have been found to carry the spirochete that causes Lyme disease.

5. Does a "bulls-eye" rash go away without treatment?

A Lyme rash (ECM) will often disappear on its own without treatment, but it may linger for quite some time. It may reappear later as a single rash or emerge as multiple rashes.

6. Does a Lyme rash occur at the site of the bite or elsewhere?

The ECM rash may appear at the site of the tick bite or elsewhere on the body. Not everyone will get a rash (approximately 50%) and some people will have multiple rashes. Less than 10% of children get a rash.

7. If prescribing doxycycline for a tick bite, what precautions should be advised while taking the medication?

Patients should be advised that taking doxycycline may cause sun sensitivity. Doxycycline should not be taken with milk or other dairy products since these products may inhibit absorption of the antibiotic. Doxycycline is not recommended for children since it may cause discoloration of their teeth. Doxycycline may also promote yeast and fungal overgrowths which should be prevented and addressed if they occur. Nausea, vomiting, and diarrhea are some of the possible side effects of Doxycycline.

Birth control pills may not be as effective while taking Doxycycline and additional precautions to prevent pregnancy may be necessary. Doxycycline should not be taken with antacids or supplements that contain calcium, iron, magnesium, or sodium bicarbonate. Doxycycline use may cause liver problems or bruising. People taking Doxycycline should be advised that severe allergic reactions may occur and if there are any problems while taking Doxycycline, they should be reported to the doctor. For more information please check with your doctor or pharmacist.

9. If a patient previously had Lyme disease and is bitten by another infected tick, are they immune to Lyme disease?

No, they are not immune. Multiple bites may expose people to a number of other tick borne diseases in addition to the same or new strains of Lyme disease.

10. Is a lumbar puncture required to confirm neuro-Lyme? Why?

No! Lyme disease, as stated by the CDC, is a "clinical diagnosis". Research indicates that less than 20 percent of people with Lyme Disease have shown a positive reading when testing spinal fluid.

11. What are the most common diseases that are often mistaken for Lyme disease?

There are many different diseases or conditions that are found in patients with Lyme disease. All too often Borellia organisms are not considered as the source for patients complaints and their symptoms. For example, an ophthalmologist may diagnose any of the following conditions: conjunctivitis, ocular myalgias, keratitis, episcleritis, optic neuritis, pars planitis, uveitis, iritis, transient or permanent blindness, iritis, photophobia, temporal arteritis, vitritis, Horner's syndrome, ocular myasthenia gravis, or Argyll-Robertson pupil which may or may not be Lyme or tick borne disease related. All of the conditions listed above have been documented in Lyme disease patients and many of these diseases or conditions improve with proper antibiotic therapy.

Urologists, for example, may not realize that recurring bladder infections or swollen testicles can be caused by spirochetal organisms. Infectious Disease specialists often dismiss patients concerned about Lyme disease because many are under the assumption that Lyme disease is very 'rare' and/or they are not familiar with the various signs and symptoms of the disease due to their limited definition of the disease.

12. If a person has an EM rash and a negative ELISA test should they be treated for Lyme? How?

Yes! An EM rash alone is diagnostic for Lyme disease. Current guidelines approved by ILADS (International Lyme and Associated Diseases Society) recommend oral therapy for at least 6 weeks for both adults and children when a rash is present. Lyme patients who are pregnant have special recommendations to help protect themselves and their unborn child. According to the CDC, Lyme disease is a "clinical diagnosis" and negative tests are not to be used to rule out the disease.

13. Are there any studies or literature on Lyme disease?

There are over 18,000 published medical studies, abstracts, videos, websites, educational articles and brochures concerning Lyme and other tick borne illnesses.

14. How many different strains of the spirochetes have been identified to date in the United States and world wide?

Eight different species and over three hundred strains of spirochetes that cause Lyme disease and Lyme-like symptoms have been identified world wide. To date, more than 100 different strains have been identified in the United States.

15. What is STARI?

STARI is one strain of spirochete (over 300 known) that was discovered in ticks and humans in the southeastern sections of the United States within the past few years. It causes Lyme-like symptoms, but is not normally detected by the current standard Lyme tests. STARI (Southern Tick-Associated Rash Illness).

16. What is WA-1 or Babesia ducani?

WA-1 (Babesia ducani) is a recently identified strain of Babesiosis found in a number of people who are also infected with Lyme disease. There have been tests developed to identify this specific strain in humans but the tests are not performed at all labs. To test for this strain of Babesiosis, physicians should have blood sent to quality labs specializing in tick borne disease detection, such as Igenex Lab in Palo Alto, CA. A growing number of patients have been diagnosed with this strain, originally described as a "west coast" strain when it was detected in Washington state patients. It is now being detected in many east coast patients.

17. Approximately how many Lyme disease patients are co-infected with Babesiosis? What is the most effective treatment for Babesiosis?

Estimates from labs, support group leaders and doctors offices indicate that approximately 25-50 percent of patients with Lyme disease are also are co-infected with Babesiosis. Unfortunately, many patients are never tested so the numbers may be even higher.

A combination of Atovaquone (Mepron-750 mg. 2x daily) and Azithromyacin (Zithromax- 250- 500 mg day) is considered to be the best known treatment for Babesiosis at this time, with a duration of several months in some patients. Some patients may need extended treatment or need to be retreated if symptoms persist or return. The Mepron/Zithromax protocol is reported to be less toxic than the quinine sulfate and clindamycin combination that was once used and there are fewer side effects reported with this treatment.

18. What percentage of people with Lyme disease remember having a rash or remember being bitten by a tick?

Various studies show that anywhere from 20-80 percent of seropositive Lyme disease patients with active symptoms do not recall a rash. Less than 50 percent of Lyme patients remember being bitten by a tick. Children experience a Lyme rash less than 10% of the time.

19. After a person is bitten by a tick, how soon is it before the spirochete can be found in the spinal fluid?

Reports indicate spirochetes can disseminate quickly through the body (in as little as 6 hours in some cases) and it has been detected in the brain within 24 hours of exposure. In addition, spirochetes are able to change forms and remain undetected. The old 'wait and see' if symptoms appear before treating theory allows the organism to go unchecked, causing multiple problems. Late treatment also decreases the chance for a full recovery.

20. What signs and symptoms would lead a doctor to suspect a Babesia infection in a patient? How many strains of Babesiosis have been identified and how many are commonly tested in commercial labs?

Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. The symptoms may continue for long periods of time, subside, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently detected by commercial labs.

21. What does the typical Lyme rash look like?

There is no "typical rash" that all patients get when infected with Lyme disease. Many people do not remember a rash or even a tick bite. If a rash does appear, it may range from a light pink color to blazing red, to blue, to purple depending on the skin color, the type of rash and possible co-infections. The ECM rash can be as small as a quarter, be present in several locations, or be large enough to cover the entire back of an adult. The rash may be mistaken for an insect bite reaction or even ringworm. It may be hot, it may flake or swell. It may be well formed and expanding or have uneven or raised edges. It may disappear and return later and it may be slightly itchy in some individuals.

Borrelial lymphocytoma may appear on the earlobe, the scrotum, or on the nipple of the breast. It may be bright red to a bluish color and may disappear and return later.

The ACA rash (acrodermatitis chronica atrophicans) may have the appearance of a scleroderma rash and is often noticed on the feet and ankles and/or the hands in the earlier stages of presentation. It may appear elsewhere on the body and can cause neurological damage and affect underlying organs.

Many patients infected with Babesia organisms do not present with a rash, however, they may appear jaundiced and some may have a petechial rash.

23. Do people with Bartonella have a rash?

The rashes/lesions that are typically associated with Bartonella may not be present in patients or may not be noticed. If there is a rash/lesion, it may appear to be a small reddish brown lesion (often mistaken for an insect bite). It may heal without intervention. The patient exposed to Bartonella may have urticaria, vesiculopapular lesions, or erythema nodosums. Many Bartonella patients have swollen and/or tender lymph nodes which may become infected.

24. How do you test for and treat (which drugs) the "cyst or L-form" of Lyme disease?

Specific tests have been developed to identify some of the various forms of spirochetes using dark field microscopes. Tindamax, which has been shown to burst the cell walls of the cyst form, is currently being prescribed to patients. Normally Tindamax is prescribed along with other antibiotics (Doxycycline), since it is not effective on the intact spirochetes.

25. What has the CDC determined to be the proper testing procedure for confirming that a patient does or does not have Lyme disease?

TRICK question- The CDC states emphatically that Lyme tests are NOT to be used to exclude a diagnosis of Lyme disease. A negative test is NOT to be considered absolute by any means, nor is it to be used to indicate a cure. As the CDC states, Lyme disease is a "clinical diagnosis". No test has been developed that can confirm if a patient is cured. A negative test does NOT indicate a cure.

26. What is the two tier testing procedure set up by the IDSA/CDC for testing patients suspected of having Lyme disease and what are the most common problems with this procedure?

The CDC and IDSA recommends an ELISA (titer) first, which, under the best circumstances, only identifies a small percentage of infected patients. An ELISA therefore, should NOT be used as a screening test due to the notoriously unreliable results. The IDSA guidelines state, if the ELISA is positive, physicians are to perform a Western Blot test. Under the best circumstances a Western Blot only positively identifies 70-80 percent of those who have been exposed. Most tests will not be able to detect exposure for several weeks to a month after being bitten since antibodies do not build to a detectable level until that time.

Most labs do not report specific bands on the Western Blot tests, hindering the experienced physician and the diagnosis even further. The restrictive criteria to determine a "positive test" and the 2-tiered method allows many cases of Lyme disease to be missed.

The CDC dictates which specific bands on a Western Blot are to be used to consider a Lyme test "positive". When the list was originally developed, certain bands specific for Lyme disease were not included; however if these bands are positive it confirms exposure even though it is incorrectly reported to the doctor and patient as a "negative" test.

Many "borderline" tests are reported to patients as being negative, and many positive tests are incorrectly reported to be "false-positive" because physicians are not familiar with reading the test results, nor with the multiple symptoms that can occur in a person with Lyme disease. Many patients with chronic Lyme disease have low titers or seronegative results. The best approach to help prevent developing Lyme disease is to treat the bite. To date, most other prevention measures have failed. Get it Right, Treat the Bite! www.TreatTheBite.com

27. Which bands normally show up first on a Western Blot test? Which bands are specific for Lyme disease? Which bands normally appear after the patient has had Lyme for at least one year?

The first Western Blot band to show positive can be the 41KD band followed intermittently by the 23KD band. Bands 18KD, 23-25KD, 31KD, 34KD, 37KD, 39KD, 83KD and 93KD are specific for indicating Bb (Lyme) exposure. The problem is they may not show up early in the infection, may not appear for a year or more, or may not show up at all. The presence of the 41KD band, in a Lyme patient, along with one of the specific bands listed above indicates a person has been exposed to Lyme disease and appropriate treatment should be initiated.

28. Why would a Lyme test not be accurate?

1. Antibiotic use prior to testing 2. Patient has been on steroids or cancer drugs 3. Antibodies are bound by bacteria 4. Immunosuppression 5. The bacteria has shifted forms (L-form, cyst form) 6. Lab standards for cut off are too high 7. The test was performed too soon, before antibodies have a chance to develop 8. Bands are for reporting purposes, not for clinical diagnosis and are being misunderstood 9. Using labs that do not specialize in tick borne illnesses 10. Contamination of specimens 11. Various strains of the organism (over 300 known) are not identified using standard tests 12. Biofilms

29. Can bismuth be used for Lyme patients?

Studies have shown that bismuth will penetrate Borellia cyst walls. Intestinal problems are especially common in children with Lyme disease and bismuth compounds may eventually prove to be effective in treating the cyst form of the bacteria in the intestines. Check with your doctor for updated information concerning bismuth and other cyst busters (Tindamax).

30. What are the symptoms of Bartonella? What is the standard treatment for Bartonella and how long should a person be treated?

Common symptoms of Bartonella include fatigue, swollen lymph nodes, encephalopathy, headaches, cognitive dysfunction, various rashes/lesions, vision problems, numbness, and tingling. Reports indicate Doxycycline may be effective in treating Bartonella. Rifampin has also been used in combination with Doxy, but is not as successful when used alone. Several other antibiotics have been reported to be successful in Bartonella treatment and new discoveries are being reported. Antibiotics have occasionally been used for over a year to attempt to eradicate the persistent Bartonella bacteria.

31. If a patient is infected with Lyme, Babesiosis, and/or Ehrlichiosis, which infection should be treated first?

In co-infected patients, experts have noted that treating Babesia first has been proven to be more effective, however, in acute situations, treatment for all infections should be considered.

32. Where would you send blood and tissue samples to have the best available tests done on Lyme patients?

Jarisch-Herxheimer's reactions (herx) often occur during antibiotic therapy for spirochetal infections and may be fatal in some cases. A 'herx' occurs when the spirochetes die off and produce toxins which can overwhelm a person's body. Patient's symptoms may become much worse during the reaction. According to the expert tick borne disease treating physicians, due to the replication cycle of the spirochete, treatment for Lyme should continue for several months after all Jarisch-Herxheimer reactions have ceased and all symptoms have cleared, or the patient is very likely to relapse.

36. How does prednizone or steroids help Lyme patients?

Trick question- Do not take steroids if Lyme disease is even suspected, unless it is a life threatening emergency. Steroids suppress the immune system and allow the spirochetes a non-challenged environment in which to multiply. Many people who now suffer with chronic cases of Lyme disease were given steroids and are now chronically ill, disabled or have died. If you must take steroids it is recommended to take antibiotics during that time.

37. Approximately how many Lyme cases are reported to the State and CDC?

New Jersey ranks fourth in the nation for the highest number of reported Lyme disease cases. A total of 3,214 cases were reported in New Jersey in 2008. It is estimated by the CDC that this figure should be at least ten times higher, therefore over 31,000 people were exposed that year.

38. What are the signs or symptoms of Lyme disease?

Lyme is a multi-systemic disease that can cause multiple signs and symptoms.

Lyme disease can have a wide range of symptoms, which can go dormant (sometimes for years), can migrate, return, disappear, or change day by day. Symptoms can be aggravated by stress, medications, weather, and other outside influences. Symptoms may tend to worsen on a four week peaking cycle. SOME of the symptoms that may be found in those with Lyme disease include: Flu-like symptoms, headaches (mild to severe), recurring low grade fevers or fevers up to 104.5 degrees. Usually in the first few weeks of Lyme disease fevers tend to be higher. (Patients with chronic Lyme disease often tend to have a "normal temperature" below 98.6 degrees, therefore, a slight rise in temperature may be all that is noted.)

Often patients exhibit fatigue (mild to extreme), joint pain (with or without swelling), muscle pain, connective tissue pain, recurring sore throat (sometimes only on one side of the throat), swollen glands (come and go), varying shades of red on ear lobes and pinna, malar rash, cold hands and feet in a warm environment, weakness, lightheadedness, eczema and psoriasis, painful or itching skin, flushing, night or day sweats, inordinate amounts of sweating, anhydrosis (inability to sweat), or dermatitis (acrodermatitis chronica). There may be a rash, but it isn't noticed or does not appear in all cases (approximately 50% of patients).

The rash may be basically circular or oval-shaped with outward spreading, however, other varieties are seen. The rash may be singular or multiple, at the site of a bug bite or in another location, warm to touch, or slightly raised with distinct borders. In dark skinned individuals the rash may appear to be a bruise.

Some patients have problems with numbers and sequencing, disorganization of thoughts, rambling on in great detail while talking, frequent errors in word selection or pronunciation, changes in personality, short attention span, Tourette manifestations, OCD (obsessive compulsive disorder), raging emotions and cranial nerve palsies.

Patients have reported bladder disfunction (neurogenic bladder with either hesitancy, frequency, loss of bladder awareness, urinary retention, incontinence or symptoms of UTI, and chronic pyelonephritis). Intersitial cystitis, irregular or severe menstrual cycles with decreased or increased bleeding, early menopause, a new onset of P.M.S. symptoms, or disturbed estrogen and progesterone levels are documented in many cases.

Other problems include the possibility of altered pregnancy outcomes, severe symptoms during pregnancy, abdominal bloating, irritable bowel syndrome, abdominal pain and cramping (may appear to be ulcers), loss of sex drive, testicular or pelvic pain, breast pain, and fibrocystic breast disease. Diarrhea (which can come and go or last for months with no explanation), constipation (which can be severe enough to cause blockage), irritable bowel syndrome, spastic colon, nausea, stomach acid reflux, gastritis, abdominal myositis, and indigestion are some of the gasto-intestinal disorders reported.

In addition, patients may demonstrate a higher occurrence of various types of cysts (liver, breast, bone, ovary, skin, pineal gland and kidney).

Some Lyme patients are diagnosed by their eye care professionals and have been documented as suffering from one or more of the following disorders: conjunctivitis, ocular myalgias, keratitis, episcleritis, optic neuritis, pars planitis, uveitis, iritis, transient or permanent blindness, iritis, photophobia, temporal arteritis, vitritis, Horner's syndrome, ocular myasthenia gravis, and Argyll-Robertson pupil. Often eye problems in Lyme patients require changing prescriptions for glasses more often than normal.

In addition, there may be chest pain or soreness, enlarged spleen, liver function disorders, tremors, extreme sensitivity to being touched or bumped, burning sensations, stiff neck, meningitis, and encephalitis. Patients may experience continual or recurring infections (sinus, kidney and urinary tract are most common).

Patients may suffer from a weakened immune system, the development of new allergies, recurring upper respiratory tract infections (causing, or worsening of pre-existing sinusitis, asthma, bronchitis, otitis, mastoiditis), and allergic or chemical hypersensitivity's.

Some patients tend to suffer from a monthly "flare-up" of symptoms as the spirochetes reproduce and/or die off.

39. When testing by EEG and MRI, what are the results that may indicate Lyme disease could be a problem?

Some EEG's have been abnormal showing bilateral sharp waves and some slowing. CAT Scans are usually normal. A number of MRI's have shown evidence of increased signal in the white matter, which may resemble what is seen in patients with MS.

40. What are the symptoms and signs in a patient with Ehrlichiosis?

Symptoms of Ehrlichiosis may include: high fever, chills, muscle pain, headaches, confusion, nausea and vomiting. A few patients may develop a rash similar to Rocky Mountain Spotted Fever. If Ehrlichiosis is suspected, treatment should begin immediately.

41. Is Babesia a bacteria, protozoan, virus, or parasite?

Babesiosis is caused by a protozal parasite which should be treated with antiviral medications and an antibiotic combination. Antibiotics alone are not effective for treating Babesiosis.

42. Is Ehrlichiosis or Anaplasmosis more common in New Jersey?

Both tick borne diseases are prevalent in New Jersey and are responsible for infecting both animals and humans. Serology tests for both should be performed if either disease is suspected.

43. Approximately how many late cases of sero-negative Lyme patients will become sero-positive after successful treatment?

It has been reported that increasing numbers of seronegative patients who were diagnosed clinically and treated for Lyme disease, converted to seropositive after the start or completion of antibiotic therapy. Unfortunately, physicians unfamiliar with Lyme disease often refuse treatment to seronegative patients even when they have active symptoms and a history of exposure. The CDC states Lyme disease is a clinical diagnosis and negative tests should not be used to rule out the diagnosis.

44. Why do some patients respond to certain antibiotics and others do not respond?

Certain gene-types, spirochetal loads, various strains, co-infections, previous health issues, delays in treatment, immune system activity, and many other factors contribute to the success or failure of antibiotic therapy. A one size fits all approach is not advised. Each patient's history and clinical picture should be considered by experienced physicians prior to and throughout treatment.

45. How high of a dose of doxycycline is needed for adults to allow the medications to be bactericidal instead of bacteriostatic?

The typical doses (100 mg 2 X day) of Doxycycline that were prescribed by many doctors were, according to experts, not high enough to be considered bacteriostatic (killing action) for Lyme disease. To enhance antibiotic action several other agents are now being prescribed along with the antibiotics in order to increase effectiveness. Additionally, the recommendations for Doxycycline doses now range from 300-600 mg a day unless contraindicated. If necessary, Doxycycline or other antibiotics can be administered by IV to keep blood levels high, or administered in combination with other antibiotics (such as cyst busters). For more information: http://ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

46. What medications are prescribed to remove Lyme disease neurotoxins from the body?

Welchol, Questran, and herbs are sometimes used to assist in removing toxins. Other methods have also been found useful for some people. Patients should check with their doctors for more in-depth information.

47. Should a patient with Lyme disease be restricted from donating blood?

Anyone who has Lyme disease or any of the tick borne co-infections should not donate blood or organs. It has been determined blood bank conditions do not kill spirochetes and some tick borne disease organisms have been passed on to recipients of blood donations causing a worsening of their condition, disability and even death.

48. What special precautions should be taken with pregnant women who contract Lyme disease?

There are recommendations for treating pregnant women infected with Lyme and other tick borne illnesses. All pregnant patients should be tested for co-infections and should be aware that breast milk may be capable of passing infections to children. Cord samples, blood and tissue can be sent for PCR testing to check for Lyme and other tick borne diseases, although a negative test would not indicate a newborn has not been infected. For information on pregnancy and Lyme: https://sites.google.com/site/marylandlyme/pregnancy-lyme

49. What are the symptoms of Brucellosis?

Fever, chills, headaches, excessive sweating, fatigue, back pain and joint pain are some of the symptoms that may be present in a person infected with Brucellosis.

50. How do you properly remove a tick? Where can the tick be sent for testing and what are the costs?

To remove an attached tick- Do not touch the tick with your fingers or squeeze the tick. Use fine point tweezers to grasp the tick as close to the skin as possible. Pull the tick out in the opposite direction from the way it entered with a smooth motion. Do not twist or crush the tick. Clean the wound with soap and water or alcohol to help prevent a secondary infection. www.TreatTheBite.com

Place the tick, dead or alive, in a plastic baggy with a cotton ball that is slightly damp. Contact a lab that performs tick testing, such as IGeneX Lab, to determine the current shipping methods and prices for tick testing. The current cost to test an individual tick (or up to 20 ticks together) is approximately $50.00- $65.00 for each tick borne disease test ordered. www.Igenex.com

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